Pyroluria prevalence and associated conditions

Pyroluria is a genetic condition that is frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.

Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing these symptoms.

Joan Mathews-Larson is someone who I consider an expert on the subject of pyroluria. In her book Depression-Free Naturally, she reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics.

Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders.

According to McGinnis, pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome.

I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.

I thought it would be useful to summarize the above percentages for some clarity. I used some educated guesses to get some ranges we may expect to see. Keep in mind that the differing percentages are because of the different populations each practitioner works with:

Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy). Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD. She shared that the pyroluria protocol helped with her TBMD symptoms.

Other factors/conditions to consider:

Miscarriage – Carl Pfeiffer observed that pyroluria is more common in girls and that girls in the family often look alike. It seems that boy babies are more frequently miscarried

MTHFR defects – I have been hearing that many people with pyroluria also have one or both of the MTHFR polymorphisms. We know that methylation polymorphisms are a factor in miscarriages and it would be interesting to know if more boys are miscarried.

Other conditions that have a social anxiety aspect, a possible neurotransmitter imbalance with a likely pyroluria connection. These came up as questions during season 3 of the Anxiety Summit and I’ll report back as I find out more:

Alice in Wonderland Syndrome. I don’t know if there is there a connection between pyroluria and Alice in Wonderland Syndrome (where the person sees large or small objects/people and often has migraines). I had never heard of this condition but my quick search had me wondering about the word “hallucinations.” The original work by Carl Pfeiffer was with schizophrenics who had pyroluria so it’s possible that there is a connection.

Selective mutism I also don’t know if there is a connection between pyroluria and selective mutism. We do know that selective mutism often goes hand in hand with anxiety and social anxiety.

Both young girls with the above conditions did score high on the pyroluria questionnaire and it will be wonderful to hear if the pyroluria protocol helps them. I really do hope so!

I will be doing more digging to find the connections between pyroluria and Lyme disease, leaky gut and oxalate issues. I also plan to take a deeper dive into the joint problems we see in pyrolurics so stay tuned for future blogs on these topics.

If you’re aware of any other conditions related to pyroluria or if have pyroluria and have seen other health conditions improve, please do share in the comments.

Reader Interactions

Comments

Hi,
Thanks so very much for all you do! The summits have been wonderful! I am not able to purchase them at the moment but I hope to eventually. I have just become a certified nutritionist so that I can help my family’s health problems and hopefully others. I love to learn and am so thankful for people like you who are trying to get the information out to help with all the debilitating health problems so prevalent today. One of the issues that I haven’t been able to help yet has been my grand daughter’s anxiety. She goes to bed fearful and has nightmares almost every night. She just turned five and has had deep fear and anxiety since birth. She was born allergic to almost all foods my her mom, my daughter isn’t good at eating well. I try to do what I can to help. We all just did the zinc text and all are deficient. Fortunately the granddaughter’s eventual taste was sweet. That night was the very first night that she hasn’t had a nightmare. She woke up and promptly told me she dreamed that the floor turned into water and she got to go swimming and had so much fun. That dream could have turned bad since she had a swim scare as has been afraid of even taking a bath:( We will continue to work on the Pyroluria protocol as we can. Any suggestions for a liquid, good tasting B6 for children? Can I give a 5 year old the Primrose oil?
Thanks again soooo much!

Sharon
Good for you for going back to school to help your family and others. Thanks for sharing your granddaughters dream! Designs for health has a liquid P5P that is quite sweet and kids often like it. If you can I’d get fatty acid testing done.

i read on dr wilsons copper toxicity syndrome website that high copper can cause an individual to experience women smelling like men & men smelling like women & so they are homosexual, attracted to the same sex, not sure if this is true because i also heard on ABC radio interview with a scientist that research has shown that a pregnant woman exposed to a particular chemical at 23 weeks of pregnancy will disrupt hormones in the fetus and cause homosexuality, i cant remember the name of the chemical !?

Maybe this is a good place to leave my comment on speech and selective mutism.
My daughter was diagnosed via Dr. Mensah with extreme pyroluria. She was slow in learning to talk. But at the time of the onset of progressive selective mutism she was 7 years old. First it was not talking to people whom she didn’t see during the week(only Sundays) , then after moving to America to everybody being new, no one heard a peep out of her for 11 and a half months. It was a miracle when she started smiling (lips were pressed together all day long even in her sleep. Eating/ drinking/ toothbrushing – done in extreme haste, unwillingness to let her mouth be seen open) and was willing after a number of encouraging prompting (after all, something had changed – her mouth was open to smiling) she started whispering and at the end of that day had agreed to talking with involvement of the vocal cords.

Bettina
Thanks for sharing your daughter’s wonderful story! I have seen connections between selective mutism and pyroluria. May I ask what protocol she was put on and how quickly she saw an improvement in speaking and other symptoms of pyroluria? Was it only the pyroluria protocol or were other nutritional factors also addressed?

Hi Trudy, thanks for your great work. You are very committed and provide a great service to humanity. Would it be possible to list the best supplements for and general dosage levels for pyroluria and the best times to take them?

I have found complete relieve from anxiety and depression symptoms using your pyroluria protocol and also the aminoacids. I was wondering if you have seen problems with heart palpitations or arrhythmias after starting the protocol. Thank you so much for all the helpful information!!!

I’m pleased to hear about the complete relief from anxiety and depression

But if someone has heart palpitations after starting any supplements I’d have them stop immediately. We often have to try and figure out which supplement is causing an issue – either removing all and adding one back at a time or removing one at a time.

If a client has no more anxiety and depression with the supps and has no adverse symptoms but then later gets heart palpitations then it may be that they no longer need a particular amino acid i.e. it’s now too much

I would of course always send them to get checked out by their doctor too

I have MANY of the symptoms of pyroluria but I just did the zinc test with some liquid zinc (that also contained some copper and a couple other minerals) and it tasted HORRIBLE! I had to spit it out, the yucky feeling is still on my tongue. I’ve taken a zinc, b6 supplement from solaray and the 4 times I’ve taken it have had to run to the bathroom to throw up! Apparently it does not agree with me so how do I interpret that?

My anxiety continues and is turning into being stressed in social situations, I don’t let myself avoid places, I just power through but it is sooooo annoying. I know I can overcome this but I don’t feel like I’m seeing many results.

I take magnesium and a bcomplex which help. I also take GABA and 5-htp which help. I don’t take a multi or omega 3 oil but am thinking maybe I should? I do yoga, I eat clean, usually grain free but I have added sourdough properly prepared grains.

I take a homeopathic that helps with the tightness in my chest and helps relax me but I can’t do that forever…

I eat plenty of probiotic foods and make my own kefir, kombucha and fermented veggies. I work on my thoughts and keeping them positive.

I feel like I’m doing SO many things to help with this but there are still some holes. I am definitely hypoglycemic so I work hard to get protein at every meal and not let myself get hungry. I know my adrenals are shot from being stressed for years, and now that certain things in life are getting all figured out I still feel stressed, which is not fun when you have 3 little kids! I want to be calm, chill, and confident!:)

I am absolutely terrified of public speaking and have a couple bad experiences to back up this fear so thats tricky.

Do you have any recommendations for what I could do to help? What multi do you recommend? I found one by Thorne that doesn’t have copper. Thank you for all you do in raising awareness and alternative treatment for this issue. It is so prevalent and my goal is to continue my schooling in the field of nutrition and help others just as you are doing. Keep it up girl, you rock!

Hannah
I’m not sure if this is a combo zinc, B6 supplement and if yes, I’d switch to individual supplements as it’s much easier to manage.

With a strong reaction to the zinc challenge it’s likely you don’t need zinc. If you did need it, zinc should be taken in the middle of a meal to prevent nausea. And some people react to one form and not another.

You say “liquid zinc (that also contained some copper and a couple other minerals)” – this is not the zinc challenge which only contains zinc sulfate.

Low vitamin b6 is what causes the nausea so this may be the culprit too. Hence the reason for doing one at a time.

Hi Hannah,
I know it’s a few years after your original post, but I had the same problem when first taking zinc supplements. My doctor suggested I use chelated zinc (you can order it on amazon) and my nausea went away!
Hope this finds you and helps!

I did completely eliminate my leaky gut with one dose of
Combantrin. while we would all like to think that all natural remedies are
better than anything big pharma comes up with, this is one where they
definitely got it right. I’d tried other tinctures because I suspected
parasites. Mold hadn’t occurred to me until I saw the documentary “Moldy”,
and it described my symptoms exactly, without also ascribing another dozen
potential effects. So, because it may help a great many people, quickly,
may I humbly suggest finding Combantrin or something similar in your
neighborhood. I’m Canadian and don’t know if it exists anywhere else.
Now for the controversial part; I got my leaky gut after a violent
reaction to a tetanus booster in the early nineties. This was before the
internet brought the fact that vaccines can damage the protective lining
of the gut to our attention. So, being that a vaccine brought on my leaky
gut and one dose of a single product, Combantrin got rid of it… do you
know of anyone else with leaky gut and perhaps other diagnosed illnesses
who can benefit from getting rid of leaky gut? I’m really not joking here.
Dr. Wakefield, amongst others found through his research that the damaged
lining prevents proper absorption of essential nutrients. Ones that have
had behavioral implications. I’m not saying it, but I’m damn well implying
it!

Hi Trudy. Yes, it is a dewormer. I didn’t have worms so far as I could tell, but something unwanted was living in my GI tract. Tinctures designed to rid me of parasites had temporary success only, but made a difference while they lasted, which was only hours. Then I could feel something grow back. The Combantrin lasted days, and even then, I’m not sure it’s permanent. But without the leaky gut, my brain fog disappeared too. I hadn’t been able to hold a thought long enough to write it down even as short a time as it is taking to write this in over thirty-five years. If anyone can figure out what else the Combantrin may have knocked out of me and what its connection to leaky gut and severe brain fog is, they could be doing a HUGE favor for a lot of people.

I asked this question earlier but never found the answer anywhere after the conference. Are you familiar with Diatomaceous Earth (DE)for parasites? You have to use food-grade but it is very reasonable. I have been using some from Lumino but would like to know if anybody else is familiar with it. Thanks Trudy for the great job you are doing because most of the doctors in our area don’t even believe you can get parasites unless you travel outside the country.

Hi Jennie & Trudy,
I have heard of DE. It’s harmless and multi-purpose as it can be combined with other things and made into healthy cleansers, an alternative to baking soda toothpaste etc. I did try it as a parasite cleanser, but not on its own, so it’s difficult for me to know how much help it was.

I have recently been diagnosed with pyroluria and undermethylation. I have a severe leaky gut/ candida. What do you think is the best protocol (gut wise) for healing. I feel that I am reacting to everything still and my hands become red after certain foods.

Question: I have long suspected I have pyruloria, but of course non of my docs knew anything about it, alternative or allopathic. I answered an overwhelming amount of questions that indicate that I probably do have it. I decided to just start taking supplemental B6 and P5P and felt tremendously better, I had already been upping my zinc due to hi copper. I took a urine test from Great Plains Labs AFTER I started supplementing and the results said “normal”, it registered at 7, whereas 20 is I believe a confirmation that you indeed have it. My question being, since I was taking the appropriate supplements to offset it, is it possible that the pyroles didn’t show up and I do indeed have it?

Sofia
It’s wonderful to hear you are feeling tremendously better! The recommendation is to stop zinc and vitamin B6 for a few weeks before testing, so yes this could have affected results. However we often see false negatives on the test. I use the questionnaire and response to supplements

Great thanks so much for the response. I like your line of thinking, response to supplements and questionnaire makes more sense. I think a large part of what has also helped is the Nutritional Balancing program I’m doing. I have extremely high copper and have been really working to get rid of some of that, still have a ways to go but figuring out the pyrole issue has been huge. Thanks again!

Pyroluria is showing up in a number of chronic lyme patients as being an underlying obstacle to tolerating treatment, and effective and complete recovery. It’s unclear if it’s the underlying factor or acquired as a part of the progression from the illness.

Confused – been on the pyroloria protocol 9 days now, started the zinc (30mg), b6 (100mg) and EPO (1300mg) and no change in symptoms, no dream recall at all. If anything sleep & dream recall has got worse, pre the supplements I could vaguely recall dreams… Upped the b6 to 200mg 2 days ago, upping the zinc to 60mg today and will monitor… It’s all a mystery…

Prevalence in histamine issues and mast cells activation disorder is 17% in healthy population and pyrrole is part of it. This estimation is by Dr. Lawrence B Afrin.

Also pyrrole disroder is big part of hypermobility Ehlers Danlos syndrome 3 and mixed connective tissue disorder 80% of us suffer with pyrrole in collagen issues. Often undiagnosed and professor Rodney Grahame says every 5 people in 30 people we meet have it.

Now there is a talk that hypermobility is induced by environemment. So epigenetics could reverse it.

Lion’s mane was my to go supplement with d ribose to get rid of social anxiety and feeling easily overwhelmed by stress, people

Maruschka
This is so interesting and much of it new to me. I’ve heard about the pyroluria hypermobility connection and problems with connective tissue disorders. I’m not familiar with the work of Dr. Lawrence B Afrin or professor Rodney Grahame and want to learn more. Do you perhaps have links to some of their work?

I am not familiar with lion’s mane combined with d ribose for social anxiety – but I’m glad you found a solution and I look forward to learning more.

I’m curious how you score on the pyroluria questionnaire and if you had the urine test done?

Hi, Trudy. I somehow bumped into puyroluria awhile back and found that I exibited almost all the pyroluria symptoms i decided to try out the whole zinc+ b6 stack.
I’ve found it to be refreshing and a lot more calmer demeanor

I bought some liquid zinc and tried the zinc test and have found zinc to be sour and gross.
Does this mean that I should take the b6 without the zinc?
I also noticed that when i take zinc i start to get stomach cramps nausea and a generel upset stomach and that’s even with taking it with a meal.

Without a meal i get cold sweats and vomit. It’s happened quite a few times which left me wondering if i really am zinc deficient.

Hi Trudy. I was wondering if you’d ever be interested on doing a post on Ehlers-Danlos Syndrome/Joint Hypermobility. I wonder whether many of your clients suffer from it and possibly don’t even realize. It’s a group of connective tissue disorders which had mostly been thought to affect only the joints, skin, skeleton and blood vessels, but it turns out that connective tissue is a necessary part of all organs and that there are much higher than expected incidences of anxiety, depression, chronic pain which is often labelled as fibromyalgia, gastrointestinal problems and more. I suspect a lot of people with EDS also have pyroluria, there are high numbers of people having to deal with PoTS and MCAS and very high levels of disability with it. I think that having connective tissue in the gut that might be more prone to tearing and leaking might make dietary changes even more important, but might also be one of the things that results in less good responses to nutrient therapies. As well as that there are so many people with EDS on cocktails of medications for pain, sleep, anxiety, depression, reflux, IBS, menstrual disorders etc. and I can’t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you’ve come across much? Thanks.

Catriona
It’s on my long list of topics to look into and learn more about and write about. I also feel there may be a connection to pyroluria. The gut connection you mention is an interesting one and makes a lot of sense.

There are a number of papers published in 2014 and 2015 linking EDS with psychiatric disorders. None mention social anxiety but anxiety is very common, as is depression. Here is one of them: “Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively.” http://www.ncbi.nlm.nih.gov/pubmed/26433894

As you can see in this blog post …Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy) may be related to pyroluria. Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD. She shared that the pyroluria protocol helped with her TBMD symptom.

I look forward to learning more and hope to hear from others who have seen these connections.

Please do share what you have seen personally and if the pyroluria protocol has helped with any of your symptoms.

And thanks for asking the question – it helps me to learn and I love learning so I can help more people.

I recently did a pyroluria test an came back at normalised 16, is it correct anything above 15 is a positive? If it came back at normalised 100 would the treatment still be the same or is it the fact I’m just above normal, that treatment should be easier?

I also have an MTHFR Gene Mutation (Compound heterozygous) and I’m trying a B12 currently.

Seems I won the lottery with my genes, just wondering if you’ve seen many people with mthfr and pyroluria ?

Adam
Different labs have different ranges so I would check with the lab. If someone has symptoms I have them start on the pyroluria protocol regardless of results and have not found that result levels correlate with how much of the nutrients are needed.

I took a regime for this issue two years ago. The doctor could never get me to a point where I could remember my dreams (even with activated B6) and I never felt any better. He prepared a compounding formula for me and said I was taking the maximum of all supplements.

I also have hypothyroidism and have torn the labrum in my hip (cartilage).

I see where you commented some people with pyroluria may only need B6 or zinc. I started feeling tingling in my hands and feet about day 5 of taking Vital Nutrients B6, 100 mg. I started on Country Time P5P at 50 mg. as an alternative. Still tingling. Also experience erratic dizziness, possibly low blood pressure? Which I read may be a side effect at a Mayo Clinic link: http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

It’s frustrating because I see improvement in anxiety, but not much in dream recall. Does B6 have a half-life property wherein titrating from smaller doses up to larger ones might work over time? Should I consider another brand…or conclude I have no need for B6?

(FYI: I also started with the other protocol in taking Douglas optizinc, 30 mg. and Now EPO. Long term supplements include Turmeric, Magnesium, D3, K2, probiotic, fish oil. I was taking a multi, but noticed it had copper, so discontinued it the second week of starting the pyro protocol.)

Hi. Just listened to a video you did in 2014 as part of my research into pyrrole disorder as i think my 9yr old child has it. I noticed you didnt mention the violent moods that be associated with this but im sure you cant have everything included lol. Anyway lots of places mention it and its one of the many things my child exhibits as part of her anxiety. Now i am seeing connections i feel bad for making life even harder for her. Thinking too i may just have this disorder myself. Thanks for reading. Thanks also for your work in the area.

Anne-marie
Low serotonin is often a factor with pyroluria and rage and violent moods are a symptom of low serotonin. The nutrients for pyroluria also help to make serotonin but figuring out if tryptophan can help is something I’d address too. Low blood sugar and gluten may be factors too.

Hi Trudy! Firstly thank you so much again for all you share!! I have just started the optizinc with b6 but I have interstitial cystitis and I’m wondering if th p5p might be easier on my bladder / system. Do you have any thoughts? Many thanks Gillian

Hi Trudy!! Thanks you so much for your kind reply and the information you shared regarding IC and Oxalates. I infact started the optizinc supplement with B6 and have increased from1 to 2 per day and seem to be able to tolerate them well. I do feel much more at peace although I have made so many dietary changes because of the bladder issues (giving up grains, dairy and sugar, it’s hard to say what has helped… 🙂

I just want to add that I am enjoying the anxiety summit immensely. And was particularly interested in your Vegus nerve story… I feel that I do have some Vegus irritation or damage myself. I have a hiatal hernia which I manage with lifestyle changes but have also begun experiencing inflamation/burning sensation in my throat and back of mouth from time to time. I had assumed these sensations might be food sensitivities but am wondering if the supplements and excerises you used might help repair/rehab my Vegas nerve too…? Once again many thanks for all you share Trudy. When natural healing methods are not covered by our medical insurance plans it is challenging.

Kelly
Pyroluria symptoms get worse when we are under additional stress and then higher amounts are needed. This would be the first thing I’d consider. It could be mental stress/trauma/worry/family death etc or physical stress (like accidental gluten exposure, parasites)

Hi Trudy, I am taking chelated zinc which is labelled as Zinc as bisglycinate. I read above that you only recommend zinc sulphate. Am I taking the right kind of zinc? I also take vit B1 Thiamine 500mg. Both are Solgar products. Is the Thiamine too much?

I have a fair number of signs of pyroluria, but am not 100% sure. Do you think a urine test for pyroluria is a good idea and if so is there a lab or test company that you think is more accurate or better to use? I also read in an article on the web that pyroluria is a genetic metabolic condition, if this is true the 23 and Me test would show the gene it connected to. Do you believe it is a genetic condition and do you know what gene it is connected to?

Hi Trudi, I have recently come across your work after listening to you on the Bioceuticals fxMedicine podcast. I am a final year Naturopathy student (Bachelor of Health Science) and was diagnosed with Pyroluria a few years ago. It is now under control and am feeling like a new person. I suspect my son may also have polyuria but being in his late teens, it is difficult to get him to take any supplement regularly and it is an expensive regime to test and supplement if he doesn’t take it seriously! I am working on it and hopefully in a few years when he’s slightly older he will take enough interest to want some help with it.

However, I believe he has Alice in Wonderland syndrome. I have taken him to GP’s, pediatricians, optomestrists, opthamologists and no one knew what was wrong. I spent about 6 months researching the possibilities myself and came across AIWS. When I showed him some of the journal articles, he was so relieved to finally have an answer. Since then, I have had gut feeling that pyroluria and AIWS may be linked somehow. Do you have any further resources or health professionals that I might be able to reach to regarding AIWS? I find your work fascinating and I want to thank you for getting the message out there.

Hi Sallie
Glad you enjoyed my Bioceuticals fxMedicine podcasts and find my work fascinating. Really glad to hear you find like a new person with your pyroluria addressed with the right nutrients.

It can be challenging with teenage boys (and is always challenging working with a family member) so finding the motivating factor is a big driver – maybe a desire to socialize easily? And meet girls? And then finding the ideal protocol so he gets results quickly so he wants to continue. Perhaps ask him to give you a month? Could the possibility that it may help his Alice in Wonderland Syndrome be a motivation?

To answer your question, yes I suspect there may be some overlaps with pyroluria and Alice in Wonderland Syndrome and have it on my long list to blog about. I’m gathering resources and feedback from others are seeing a possible connection.

Would you mind sharing the pyroluria symptoms he experiences and the Alice in Wonderland Syndrome symptoms he experiences? Have any nutritional interventions helped with either? And does stress make symptoms of both worse?

Thank you Trudy. His pyroluria symptoms include being anxious, inner tension since childhood and will do anything to hide the feelings, nervous exhaustion (not very often however), only remembers his dreams if they are nightmares or very stressful, prefers not to eat breakfast, leans towards vegetarianism if given a choice, white spots on fingernails (although when he remembers to take zinc they disappear), pale skin but as he gets older he tans rather than burns, will get 3-4 colds per year (much more than the rest of us) and takes over a week to recover (“man-flu”!!), hayfever, sugar cravings, mother is from all-girl family, avoids stress to avoid being upset, very easily upset by criticism but will internalise it and catastrophise it.
My understanding is that his AIWS may have been triggered by an infection when he was around 6 years of age. He developed sudden onset of vomiting, fever and delirium. Still to this day, he distinctly remembers this night and recalls (like it was yesterday) not being able to stop looking at his hands because they were changing size and how far away/close up they were. I remember thinking it was the fever that was causing him to say weird things. After that particular episode, he began sleep walking, having night terrors – waking up and wandering around having conversations which made no sense. Sometimes we would find him in the shower or the laundry, shaking, talking nonsense, banging on walls. He has no recollection of this the following morning. Once he was old enough to articulate what he was experiencing, he was able to tell me he feels weird, like he needs to go to a pitch-black room and lie down. Sometimes it coincides with a headache. Everything suddenly appears as if far away then everything either looks really far away but massive or really close up but tiny. He feels dizzy while this happens also. Stress definitely increases the number of AIWS episodes. I’d love to hear your thoughts and any further research you have come across. Thank you for your time. Sallie.

Sallie
Thanks for all this. I’d highly suspect pyroluria to be a factor in someone with these symptoms, and the fact that AIWS symptoms are worse under stress is a big clue too. There is an infection connection with so many conditions and it’s also reported as one (of possibly many) root causes with AIWS (as I’m sure you’ve read about): “Reported causes include infection (especially with Epstein Barr virus), migraine, epilepsy, depression, and toxic and febrile delirium https://www.ncbi.nlm.nih.gov/pubmed/29151098.

Hi Trudy, I love your book and anxiety summit ive learnt so much.. I’m wanting to follow the pyroluria protocol but have been having problems absorbing zinc for the past year. My naturopath put me on liquid zinc due to all my stomach issues as he thinks i have low stomach acid and it tasted like water with a slight metallic taste but tasted fine the whole time and never got worse after having 2 bottles. He then got me to try capsules of zinc with selenium for a few months but then after doing the liquid zinc test it tasted like water. Is there anything or brand of these supplements you’d recommend for me as I want to be able to take the zinc and vitamin b6 asap as I have chronic social anxiety and don’t want it to hold me back in life anymore i also think I need to take l-tryptophan and chromium but I think its because of possibly having leaky gut that I can’t seem to absorb any nutrients. Looking foward to your reply, Many thanks Bec.

If someone has pyroluria does it take consuming a higher zinc level than other people for their RBC or WBC blood test levels of zinc to fall in the normal range than someone who does not suffer from pyroluria? Or would people with pyroluria taking higher levels of zinc like 50mg cause they blood work to typically be outside the normal range and show their zinc is too high?

Jennifer
Thanks for sharing – great article – many symptoms are similar to those with pyroluria. It’s interesting that there is no mention of low zinc impacting stomach acid levels and contributing to meat/animal protein aversion

Hi Trudy,
Thank you for all of the work that you do. My 15 year old Anxiety/OCD daughter recently tested high for kryptopyrroles ( 47!!) and was put on a protocol of 30mg zinc, 50 mg P5P, and 50 mg B6 daily. We went into the B6 slowly with 25mg and are upping it to 50mg this week. So far I don’t see any bad side effects- but I’m aware that there may be some down the road if she’s dumping copper- I’m told that calcium will help offset some of the unpleasantness of copper dumping- is this true? She also has the C/T mutation and has an “intermediate” pathway for methylation according to an Organic Acid Test. She has done poorly on Methyl B12 and Methyl Folate so she’s no longer on those, but I want to support her B12 and folate with natural food choices. She’s eating more meat protein, but doesn’t like vegetables so I’m wondering what food choices she can get her folate ( and additional B12 from) and if this is the best route to go. Is there a site or resource you can point me to specifially for best food choices for undermethylators? She’s also on vitamin D3, Vitamin C, Magnesium, and Inositol. She does not take a multi or a B-complex at this time. Thanks so much!

Bernadette
I’d suggest finding ways to cook veggies so she’ll enjoy them because – as I’m sure you’re aware – there are so many other benefits. I’d try roasted with coconut oil, steamed and drizzled with melted butter or made into a creamy soup. Here is a cauliflower bake recipe that teens love https://www.everywomanover29.com/blog/cauliflower-garlic-bake/

I’ve just recently found your blog and I want to comment that I am very impressed about the content here. I would like to have a consultation with you but it seems like you are not taking any new clients 🙁
I have Pyroluria, high free copper, MTHFR (homozygous C677T). I came across a clinic back in 2015 where finally some mysterious conditions and symptoms were answered. I’ve tried different compound supplements (prescribed by MD) but it seems like we can’t seem to find the perfect combo for me.
From being an undermethylated back in 2015 with horrible brain fog, low energy, poor short term memory I turned to overmethylated with Pyroluria.
I do have social anxiety (very uncomfortable in a large group of friends, I can’t stand any small talk), I am being judgemental, I feel inner tension, I have left ankle and calf stiffness and I don’t wake up rested even when I sleep 9 hrs.
I’m a mess and need help! Please let me know as soon as you start taking new clients.

Kay
Thanks for your very kind words! My book “The Antianxiety Food Solution” is a great place to start with dietary changes. It also has an entire chapter on pyroluria. For consulting you can sign up for the waiting list here https://www.everywomanover29.com/services.html and find some other helpful resources